Chugging along

Benzen has been doing great at home.  We still are giving him his Valganciclovir twice a day at 9:am and 9:pm.  We also give him a multivitamin and Iron supplements every morning.  We went to Dr. Gladieux yesterday.  He said Benz looks great!  He said he's perfect, and if we didn't know he had CMV we wouldn't be looking at things in such detail.  He said his color, muscle tone, and attentiveness was perfect for now.  I really like to hear that.  I have known Dr. G for a long time, he was my doctor since I was a toddler.  We have become great friends.  Which has made it tough for him to have to give Amy and I the worst news you would ever have to give someone.  He was Remi's doctor, he is Beyla's doctor, and now Benzen's.  Obviously, he loves giving us the good news but has delivered the bad as good as someone could considering the circumstances.  He is truly emotionally involved with our family and that really means a lot to us. 
Last night we got the call that Benzen's blood work from yesterday morning was in.  They said his biliruban was down to 3.5 which is good.  His neutrophil number was down to 1000 though.  That is not so good.  If it goes down to 500 we have to stop the Valganciclovir, and give him GCSF to bring his neutrophil count up, and then restart the Valganciclovir.  This means he is still really susceptible to infection.  Hopefully his neutrophil number rises or at least stays the same so we don't have to stop his meds. 
Today Benzen had another retina scan at the ophthalmologists office.  He said that he rarely sees congenital CMV cause chorioretinitis (which is what we are worried about causing vision loss over time).  Which Amy's reply was "that is not good news for us, because we always get the rarities and are always in the smaller side of the statistics."  The ophthalmologist said that Benzen's eyes look great and he will look at him again in six weeks to look at his eyes again.  He said babies are naturally susceptible to infection and taking into account the meds he is on and his neutrophil number being low, he wants to look at his eyes again a couple weeks after the meds are done.  His meds should be done June 21st if we don't have to pause them for any period of time.
The pictures you see above were taken by Diana Cooper.  She is Diana Lynn Photography.  She has done an amazing job taking pictures of our children!  The above two pictures are only sneak peaks as she prepares the rest of the pictures from Benzen's photo shoot.  Please check her out at http://dlynnphoto.com/ or on Facebook at http://www.facebook.com/dianalynnphoto.  Thank you Diana we can't wait to see the rest of Benzen's photos!
Good night everyone.  Keep the prayers and positive thoughts coming because they are working. 
P.S - I chose to call this post Chugging along not only because it fits but also because every morning Beyla wakes up and she says "a mornit (good morning) dadda.  Where's momma?  Where's Benzen?  I Watch Chugging?"  Which means we have to watch the open song of Chuggington on the Disney junior channel twice then go eat breakfast.
Ben